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Patient Journey Generalized Lipodystrophy
Patient Journey Partial Lipodystrophy
About Living With Lipodystrophy Admin
Sonia Rehal
I am currently an educator at McMaster University in Hamilton, Ontario and the director for Lipodystrophy Canada, and non-for-profit organization supporting lipodystrophy patients and caregivers. Being a lipodystrophy patient myself, my advocacy for awareness started young. Interested in understanding the pathophysiology of lipodystrophy, my postdoctoral training focused on lipid inflammation and insulin resistance in animal models of obesity. This journey has allowed me to travel the world and publish important research findings in highly cited research journals. More importantly, my academic career has given me a unique perspective to patient advocacy, highlighting how important disease awareness and research funding for prospective treatments and are for our lipodystrophy community. Lipodystrophy can vary in severity however these themes hold in common: Lipodystrophy is incurable, has inadequate medical treatment and affects multiple organ systems. Unfortunately, a severe form of lipodystrophy has affected my family and myself, losing both my mother and sister to its complications at a very young age. This loss has only further intensified my passion to support our rare disease community affected by lipodystrophy.
Briana Steiner
Hello warriors!
My name is Briana. I was diagnosed with Familial Partial Lipodystrophy in 2009. At the time, I hadn’t been in the doctor too many times because I seemed healthy. I actually went to a genetic specialist due to another condition that I needed to be tested for that ran on my mother’s side of the family. When the genetic specialist saw me, his eyes lit up and he asked me if I worked out at all. Of course my answer was no. He then asked me if I knew why I looked the way I did. I knew of people on my father’s side of the family that looked like me…large pronounced muscles, and fat in areas where it wasn’t supposed to be; but because I wasn’t close to any of them, I had no idea that it would be a defining moment in my life. He knew what I had, explained to me that he had only seen it in books, and that he wanted to test me for it. I of course said yes. Having Lipodystrophy has definitely been a roller coaster of a life. When I was diagnosed, I couldn’t find anything written on it except for medical journals that were definitely not written in layman’s terms. I saw photos of people who had it, and I cried thinking that not only was my life definitely going to be shorter in the grand scheme of things, but that I was going to be treated differently because I looked the way I did. I had support from my family, the small circle of friends I had, and my doctors…but no one who knew exactly what I was going through. Living With Lipodystrophy was created the same year I was diagnosed, but I didn’t have knowledge of Facebook to be able to join groups at the time. I was able to join years later and find a community of the most amazing individuals who completely understood all of the troubles and triumphs I face each and every day in order to live with this disease. Now I am an admin with the page. I am still learning, each and every day. At times I have the opportunity to teach, and that warms my heart being able to help others in a way I did not have when I was diagnosed. I am married to my soul mate, have 5 children (and many adopted children), 11 grandchildren, and a menagerie of animals. I have had 4 heart attacks (one being a widowmaker), many surgeries, tons of medication, and have seen so many doctors. I live life one day at a time and I love with my whole heart. I joke and banter and smile at life’s frustrations because that is how I deal with it. I am an advocate and a warrior! I look forward to working with Lipodystrophy United to help advocacy and teach others that they are never alone, but that there is help out there.